Impact case study database

Working with dementia groups to achieve a life more ordinary.

Trade-union style banners hold a significant cultural position in many working-class communities. They represent strength in unity for communities and social groups tackling common challenges. Social solidarity through art is highly valuable for invisible disabilities like dementia.

The project aimed to give people diagnosed with dementia and their families tools and strategies to help them cope with living with the condition in a pragmatic and positive way. By collaborating with the respective dementia support groups, the A Life More Ordinary project gave a voice to their hopes, worries and frustrations. The project has now developed banners with 16 dementia groups to help them promote campaigns and highlight their experiences. The groups from across the country represent a variety of different backgrounds and objectives including the ‘Cottingley Crew’, a group for under-65s in Leeds, ‘The New Seasiders’ a recently established group in Kent, and ‘Hamari Yaadain’, a dementia café focussed on BME dementia sufferers in Leeds.

These interventions are important in improving the quality of life for people who are suffering from, or living with someone with, a life limiting condition. Kathleen Storton, Services Manager for the Alzheimer’s Society, Central & West Lancashire, commented that “…when you have a diagnosis you can sometimes feel that you are a bit useless and you’re not needed anymore and how am I going to contribute to society? Doing something like this [the banners] has helped people feel valued.” [G] The participation in the projects gave the group members an opportunity to feel in control of an aspect of their life at a time when their diagnosis may have left them experiencing a lack of control. The physical outputs they co-created, the exhibitions, chapbooks and banners, provided a tangible reminder of the activity with a condition that may have otherwise robbed them of this memory [J1-3].

Terry, a founding member of the Ragamuffins group in Oldham, found the sessions with Beesley, McMillan and Husband provided significant therapeutic benefit. “There is also the collective benefit to the group as a whole of memories being rejuvenated on times and issues perhaps long forgotten! Such recollections are both therapeutic and stimulating and it is interesting to see the frequent change in demeanour that often manifests itself among so many of those attending within a short period of time.” [C]

Campaigning with dementia groups for “the right to a grand day out”

The Yorkshire DEEP consisted of three groups who were all campaigning on different aspects of the challenges of using public transport. ‘Minds and Voices’ (York) had focussed on improving journeys by train, ‘DEEP Vibes’ (Scarborough) had been campaigning for North Yorkshire Council to make blue badges available to people with dementia and ‘Face it Together’ (Bradford) had focussed on improving journeys by bus.

The banner produced by the Yorkshire DEEP helped to kick start a campaign to make York Railway Station more dementia friendly. The groups had been campaigning for some time but had not captured public attention, leading to the groups becoming demoralised [B]. One participant wrote on their personal blog “…we’ve worked hard to get change but disheartened at the fact no one is listening to us.” [H2] Beesley’s work with the Yorkshire DEEP [2] had highlighted both the positive and negative sides of travel for people with dementia, identifying problems with timetables, platform layouts and station announcements. The banners were unveiled by group members, with the help of a local brass band, in front of members of the press and rush-hour commuters in York Station in May 2018 [A, B]. The ceremony attracted interest and support from the watching public, press and local businesses, helping to raise the profile of the issue.

The event helped to raise awareness and understanding of the issues with the station management. Following the event Northern Rail have engaged with Minds and Voices to provide advice on redesigning timetables to make them more dementia friendly. The involvement of people with dementia is a key tenet of the A Life More Ordinary project. One participant summarised the importance of the project and these activist interventions: “Travel is so important to me, yet is so stressful. Yet small changes can make it possible. I’m so glad I changed my plan today because all our words of the past 18 months, today became an ACTION of our own” [H4]

Prior to Beesley’s involvement the three groups that made up the Yorkshire DEEP network were campaigning individually on different aspects of transport challenges. The project brought together these groups in 2017 [H1] and provided a forum to coordinate their approach and generate a louder voice for change. The groups worked in collaboration with Innovations in Dementia, an organisation that supports and campaigns for the rights of dementia patients, to contribute to two major policy submissions. Firstly, their alternative report to the UN Convention on the Rights of Persons with Disabilities and second was their response to the Government consultation on extending the Blue Badge scheme to people with ‘hidden’ disabilities such as dementia [D, E]. As a result of Beesley’s development of the campaign the groups issues were recognised as the “County Council [North Yorkshire] agreed that people with dementia or their carers could now apply for a Blue Badge over the phone – and answer ‘cognitive questions’ such as ‘How will a Blue Badge help you?’, ‘Do you want to give up and go home if things go wrong when you are out?’” [D]. Nationally, change was also brought about as the government approved the calls for blue badges to be made available for people with ‘hidden’ disabilities. [F]

Engaging dementia communities around the UK to achieve “art for all.”

The success of the York banners prompted other similar groups to explore their challenges and hopes through the use of banners [G]. Beesley and his colleagues worked closely to co-produce a series of banners, each distinctly personal to the groups. Each banner took inspiration from an existing trade-union banner and conveyed a message through the images and symbolism.

Polly Kaiser, Consultant Clinical Psychologist at Pennine Care Oldham, commented:

“They [The Ragamuffins dementia group] have gathered to re-collect their memories, to laugh and to create and in doing so relationships and connections have been built. Profound issues and themes have been addressed with a lightness of touch.” [C]

The banners were reflective of the group members interests, cultures and experiences. All the ideas included in the banners came from the group participants, which were then brought to life by Beesley and his colleagues through the production of the physical banner. In conversation, Liz Menacer, the group facilitator with Young Dementia Leeds, commented that Ian had included their clients and facilitated their needs to make a statement about their dementia experience while celebrating their individuality and personal history [J1]. As one group facilitator observed “After a dementia diagnosis people feel cast aside, they don’t feel valued as there is no treatment.” [J2] The project provided users with a feeling of recognition, allowing them the opportunity to feel “…in some degree of control…” along with friendship and fun [J2]. When asked about their involvement in the project one participant with dementia said: “Really enjoyed [the project], nice to be involved and to know people take notice of what you say.” [J3]

A common theme highlighted by facilitators from different groups was the contribution the project made towards the peer support networks between both the users and their family members. In some cases, these peer support networks have continued after loved ones have passed away, supporting family members in bereavement [J2].

Although the disruption brought about by COVID-19 limited the opportunity for the banners to be displayed, the book and website produced to go along with the exhibitions proved a useful alternative for the groups, acting as a tangible reminder of their participation in the project [J3, K]. The nature of the condition has meant that many participants no longer have clear memories of their participation in the various project elements. The simple act of producing tangible outputs, such as chapbooks, aided participants memory of involvement.

The Unfurlings exhibition at the Harris Museum, Preston, launched 6^th March 2020 and was designed to be a welcoming environment for people living with dementia. The space was designed in collaboration with the Museum and the local dementia group to provide a homely, welcoming environment with comfortable seating centrally in the room. This allowed anyone with mobility issues to enjoy the banners in comfort [J4]. Following the lockdown, The Harris digitally captured The Unfurlings exhibition and linked in recordings of Ian McMillan’s poetry to allow visitors to experience the exhibition safely from home [I].